Transcript Patient Advocacy - Leiomyosarcoma Direct Research Foundation

Patient Advocacy
Bruce MacDonald
JHYSF
Meet the Sarcoma Experts
MGH - Nov. 22, 2008
Why Am I Here Today?
Why Advocacy Is Important
Especially with Orphan Disease
• YOU know your body better than anyone
• YOU have a vested interest in your survival
• YOU must take an active role in treatment
“The key to surviving...get very very angry, very
very smart, and very very organized”
Norman Scherzer - Founder of Life Raft Group
Sarcoma Foundations
• JHYSF
http://jenniferhunteryatessarcomafoundation.org/
• Sarcoma Research at MGH
• Meet the Experts Seminar
• Support Available for Patients in Need
• LMSdr
http://www.lmsdr.org/index.php
• Pre-clinical Research Grants
• Comprehensive List of Clinical Trials
• Excellence in Care Award
Sarcoma Foundations
• Liddy Shriver Sarcoma Initiative
http://sarcomahelp.org/
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Pre-clinical Research grants
Comprehensive List of Clinical Trials
Esun Newsletter
Faces of Sarcoma
• Kristen Ann Carr Fund
http://www.sarcoma.com/
• Surgical Fellowships at MSKCC
• Sarcoma Lab at MSKCC
• Sarcoma Newsletter
Sarcoma Foundations
• Sarcoma Alliance
http://www.sarcomaalliance.com/Main.html
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Comprehensive list of clinical Trials
Peer to Peer Network
Funding for appointment at Sarcoma Center
Weekly Sarcoma Chat Sessions
• Amschwand Foundation
http://www.sarcomacancer.org/
• Funding of Pre-clinical Research
• Comprehensive guidelines for newly diagnosed
• Support Housing Initiative for patients families
Sarcoma Foundations
• Sarcoma Foundation of America
http://www.curesarcoma.org/
• Fund pre-clinical research
• Advocate for increased government funding
• Educate patients on treatment options
• NLMSF
http://www.nlmsf.org/
• Fund pre-clinical research
• Advocate for increased government funding
• Educate patients on treatment options
Patient Research Tools
• NCI Clinical Trials
http://www.cancer.gov/clinicaltrials
• Research all clinical trials with powerful search tools
• Pubmed
http://www.ncbi.nlm.nih.gov/pubmed/
• Research peer reviewed papers on any medical issue
• Find info on treatment options, new drugs, basic science
• Google Alerts
– http://news.google.com/alerts
• Have emails sent once a week for any search topic
Advocacy + Teamwork =
2008 “Excellence in Care Award”
Powerful On-Line Advocacy
• ACOR (Association of Cancer On-line Resources)
http://www.acor.org/
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836 Leiomyosarcoma subscribers
Over 159 mailing lists (many forms of Sarcoma)
Share information on treatment options
Learn real time info on clinical trials
How to deal with side effects
“Together we are more, and more effective, than we are separately.”
Dr. Doreen Kossove, LMS Patient and active participant in ACOR
Discover Treatment Options
Sample of things I found via ACOR and Research
• Aromotase Inhibitors
– Now in clinical trial with Uterine LMS
• Molecular Profiling
– Now in clinical trial for any cancer tissue
• Chemotherapy Assay
– Clinical trials with ovarian and breast cancer
• Rexin-G
– Now in Phase II clinical trials with sarcoma
• Reolysin
– Now in Phase II clinical trials with sarcoma
Patient Driven Collaboration
• CTOS - Connective Tissue Oncology Society
http://www.ctos.org/
• Founded in 1995 by wealthy patient to spur collaboration.
• Now over 400 members meet annually
• SARC - Sarcoma Alliance for Research
through Collaboration
http://www.sarctrials.org/public/pag1.aspx
• Founded by members of CTOS
• Enable clinical trial collaboration around the world
Additional Resources
• Cancer Research Institute
http://www.cancerresearch.org
– Excellent collaborative foundation
– Dedicated to cancer immunology
• Leiomyosarcoma
http://www.leiomyosarcoma.info/
– Authored by Dr. Doreen Kossove
• Comprehensive guide to LMS treatments
Support JHYSF in 2009
Our team of >70 from 2008
In Memory of
Suzanne Ash Kurtz
• Founder of LMSdr
..... “hope alone is not a plan”